Butterfly grew up with food intolerances and was diagnosed with ADHD, Asperger's
Syndrome, and learning difficulties. Now she struggles with OCDs.
This is the story of how we have faced these challenges.

Saturday, July 10, 2010

Some History

Hubby and I had survived what was, for us, a pretty devastating recession in the 90s. We'd both lost our jobs within two weeks of each other through no fault of our own. The businesses we worked for went out of business due the economic downturn. We struggled on as best we could, but wound up losing our house and a baby in the same month. But we kept going, because that's just what you do when things get tough. Mom was a big help and kept the encouragement coming. And Hubby was determined to do whatever he needed to. I had a bunch of collectibles I was content to let go, and Hubby was good at finding treasures at lawn sales, so we ran a little collectibles shop for awhile. He also refinished old furniture that others had discarded. It was an encouraging start, despite the recession. But the landlord needed more cash flow I guess, so after only a few months he hiked the rent, before we'd had a chance to get the thing really going. We were running our little business on a shoe string, so it was enough to shut us down. Afterall, we had to eat. When we left there, I was pregnant with Butterfly.

After we moved, I took a contract office management job to keep us going and worked until one day, in my eighth month, I couldn't focus on the page in front of me. I called the OB, who then put me in the hospital. After Butterfly was born, I looked after my family, and Hubby went back to college to take upgrading courses to improve his chances of finding permanent employment.

There were other challenges during this time, but they weren't all that important to Butterfly's story except to say that when she was two, she suffered separation anxiety when I also took an upgrading course and attempted to work another contract job. There were a few reasons why that didn't work out; Butterfly was one of them. My working was better for our finances, but it soon became clear that caring for Butterfly was going to be my full-time job for awhile. I was still trying to figure out her needs and it was important to focus on that. Other care-givers did their best, but it was a hassle for them to have to prepare different foods for her and there was often cross-contamination. Butterfly was spending too much time in reaction and ill. Moreover, her problems weren't being properly explored and identified. I was simply needed at home.


And so there we were, Butterfly and I, in a little rented house nearer the college than the little apartment with the latticed balcony, experimenting with foods and learning together. The challenges had just begun. I checked the ingredients on all foods to make sure there was no wheat in them, but it turned out there were other things that Bud reacted to. I called them "reactions" because of the Jekyl and Hyde effect ingesting certain things had on her. Her behaviour could change so rapidly, and so drastically, when she ate certain things... like red things. Red things were the worst. They made her violent.

One time she was on our bed which was on a cast iron bedstead, and she threw herself backward, without looking and with great force, missing the bedstead by scarcely an inch with her head. She got up and was about to do it again. I have never been so scared, before or since. I couldn't reach her to grab her. It was one of the few times I smacked her, but I dived for her and reached her bottom with one hand. She was wearing a diaper, but it was enough to get her attention. Her hands flew to her bottom and she moved closer as she cried out her indignation. I grabbed her and held on. Safe. She hadn't brained herself. Safe.

Another time she actually tried to push me down a flight of stairs. Fortunately I wasn't all that easy to push, especially for a little kid. I put my hand up to the wall to steady myself, then turned and told her to go first, in a tone and with a look that told her she just better. She passed me on the stairs with huge eyes. But I said nothing more. What was there to say or do, aside from keeping her out of reaction? Again, there was no shortage of opinions about disciplining Butterfly. I did, of course, for the usual kid mischief, when she wasn't in reaction. Time outs didn't work for her ~ she simply couldn't sit still for even two minutes. But denying her treats as a punishment made an impact, so that's the way I went.

But when she was in reaction, something had hold of her brain, so what good was punishment supposed to do, except perhaps send a situation spiralling out of control? It seemed to me it would be like punishing a kid for getting the flu and expecting that to make them better. You cannot discipline a child out of reacting to a substance that for them is a toxin. You have to identify and remove the toxin.

So after these episodes, obviously, no more red candy. I went again to the allergist I'd conferred with about Butterfly's wheat allergy. He at least understood my Jekyl and Hyde problem with her, which in itself was a huge help. Having opinions and platitudes flying at me from all directions from the well-meaning but unknowing was just an added burden to an already perplexing situation. The allergist encouraged me to trust my own instincts and gave me a list of resources he thought would genuinely help us out. And they did. One of the most useful books I got hold of was Feingold's Diet and The Feingold Cookbook. These provided anecdotal stories I could relate to, a list of foods to be avoided with kids like mine, and recipes. These books were of tremendous value to all of us, especially when I was able to get hold of a used copy of the cookbook I could afford. It was this book that got me past even more spectacular failures in the kitchen, to a place where I could feed my child without making her ill or violent. And so we all struggled to find a diet and a balance that worked.

2 comments:

  1. We started with Feingold. Even before I heard of it, we identified Red as a culprit. It makes Goose violent as well.

    The throwing herself in harm's way? I could have written that. No pushing anyone down the stairs, but she did stomp a toad once to death with a gleam in her eye and slam a cupboard door into my mother's face and crack her cheekbone. Lots more too. :(

    Sometimes it feels as if the whole world is toxic, doesn't it?

    ReplyDelete
  2. I hear ya, Chickie Pea. What this stuff does to our kids' brains is frightening. Fortunately most of Bud's victims were objects rather than people, but we did resist the idea of pets for a long time. And I think the world is toxic. There have been just too many people who've put money ahead of our world. There still are I think. Part of my research was about all the toxins out there and the impact they're having on people. I'm going to put up a list of resources as soon as I verify that they're available. The things that helped me might also help others.

    ReplyDelete